Quote:
Originally Posted by johnt
Would I take Tasigna (nilotinib) on an off-label basis?
Good question.
No. The weakness of the clinical trial results and the high price of nilotinib would stop me from using it.
Price affects me in two ways: the direct effect, I can't afford it, and an indirect effect, I have less confidence in results that come from trials of therapies which have a large profit potential.
The phase 1 clinical trial described by PDF [1] was small (12 participants). It may be just bad luck, but one participant had a heart attack, which PDF describes as "a known potential side effect of the drug". The results were not outstanding:
"... seven of the 12 did show some benefit. When all study participants were considered, the average improvement was between three to four points on a commonly used rating scale (approximately an eight percent improvement), while a five point change is generally viewed as the minimal improvement to make a difference in PD."
Reference:
[1] "Cancer Drug Shows Evidence of Safety for Parkinson’s"
Parkinson's Disease Foundation- Jul 11 2016
Cancer Drug Shows Evidence of Safety for Parkinson’s - Parkinson's Disease Foundation (PDF)
John
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I searched the internet looking for a report of someone who is using nilotinib off label with favorable results. Outrside of the GT trial, I haven't been able to find any. I know some pwp must have tried nilotinib, but if so they don't seem inclined to report.